The label isn’t the problem it is the negative connotation attached to it.
All sixteen-year-olds are exactly the same – mentally, morally and in maturity. At least that is how the law sees it.
Of course they aren’t, especially if they have a neurodevelopmental condition such as autism. For example at school my son was placed into a year below what he should have been placed and even then was tested and shown in some respects to have a mental age below even those younger kids in his year.
But when you get to your sixteenth birthday apparently everyone, irrespective of their mental age or social skills, can decide to leave school, consent to sex, join the armed forces and choose whether to partake in medical treatment. This last one was a biggie for my son as not only did he have a diagnosis of autism but was also diabetic.
Socially inexperienced, he was not perhaps given the ideal opportunities to socialise due to both his separation anxiety and his home-schooling. We combated that with buddying and introductions to the local youth centre. This worked well until it started to work far too well.
He met someone at this youth centre and soon began to spend a lot of time with them. At this point we were still administering his insulin injections so he would need to touch base with us now and again. The time he spent out and not getting insulin began to increase worryingly.
We were then told something we had long suspected – this wasn’t just a friend it was a girlfriend. Just before his sixteenth birthday he asked if he could stay over at her house which we declined, letting him know he could after he was sixteen. He wasn’t happy about this but complied.
After his birthday he did start to stay over, insisting that his girlfriend’s mother was giving him his injections. Later it transpired this was a lie, his girlfriend had been injecting him.
Excited at being in a relationship he would talk about his girlfriend a lot. None of it was very comforting. We were told that she thought a lot of people had done her wrong or had victimised her and/or her family. She was always regaling him with stories of being attacked or intimidated when at school and sometimes in the present, although always “just before you showed up.”
This worried me greatly as I knew a tactic used by cult leaders was to convince their followers they were persecuted and misrepresented. My pleas for him to take these statements with a pinch of salt went unheeded.
Overnight stays started to stretch into days and over the summer we began to see less and less of him. I’m his carer and I had no idea whether he was taking care of his diabetes when away. One blood sugar test he carried out one night, after being out for over ten hours, came back as 32 (normal is 4-7) which was around the level that sparked off his diagnosis and rush to hospital by ambulance back when he was nine.
He started to get severe leg cramps due to the amount of glucose being retained. One day when he was staying at her house – and meant to be at college – she texted me to ask the name of his Doctor. She explained that he couldn’t feel his feet and she wanted to take him to an appointment. I said I would take him but she repeatedly made excuses and blocked me (his official carer) from going with my son. After all that they ended up not going.
During the autumn we didn’t see him for almost a month. He missed my birthday. It was clear he wasn’t going to college. They were on the same course and travelled in together, so when she didn’t go in he didn’t and vice-versa. When we did see him he looked terrible, he was usually in an awful mood and prone to lash out at us for no reason, even threatening violence.
It turned out that his girlfriend’s family had moved from our hometown to a village fourteen miles away, taking our son with them without letting us know. Taking him away from his carer when his health was clearly suffering.
During this period he was seeing diabetes specialists and a counsellor and as I accompanied him on these appointments (the ones he attended at least) I made sure they were aware of the situation. I even emailed them to give more detail without having interruptions of denial.
The phrase I repeatedly encountered when relating this situation was, “at least he is being social,” to which I wanted to reply to say we’d be sure to put that on his gravestone. That was the most important thing to them, never mind what it was doing to his physical and mental health.
Because he was now sixteen it seemed that the professionals didn’t want to listen to us and were happy to accept his masking and denial. Hands were tied, lips were sealed.
One of his diabetes nurses did visit him at his girlfriend’s house to make sure he was keeping up with his control regime and was concerned. She brought up safeguarding concerns back at the hospital but that was as far as it went. It was a relief however to hear someone agree with our worries.
We were advised to look into speaking to a social worker. We were dubious about this as his girlfriend’s family had had issues with social workers and we surmised that sending in the authorities in any form would only validate her victim status and martyrdom. It would also cement her assertions that we were the villains.
Just before Christmas he came back home for good. They had split up. He had finally seen the light, on his own. Our tactic to not go in heavy handed had paid off.
It was then that we heard about the extent of the abuse and mind games – the swinging pendulum of insults and negative comments swishing to repeated insistence that he was better than he thought and didn’t need us.
This cutting off of his support network had been aimed not only at us but also at his counsellor (she hated therapists and declared they had mentally abused her), his diabetes team and even the staff at the youth centre. She tried to systematically disconnect him from all of his support network, including us.
We also found out that her family had accepted money from him. Up until the middle of autumn he had been receiving Disability Living Allowance but he lost this upon an attempt to transfer to Personal Independence Payment. Funnily enough his coming to his senses coincided with his loss of his monthly money so perhaps they had grown tired of him now he wasn’t a source of money?
He had certainly been a meal ticket for her, paying for nearly everything when they were out including clothes and other items of shopping. He had bought a Playstation 3 from a friend and ended up giving it to them and a laptop and dictation machine he acquired second hand also never left their house.
An old mobile phone of his was handed down to her, and broken within a week. His newer phone also went missing and when he gave her money to put on her card so she could order him a new phone on the internet he never received it as they split up just afterwards. I’ll remind you that my son was classed as a vulnerable child.
The months afterwards were rough for him. He was ostensibly a cult survivor undergoing de-programming. His college course suffered as she was still there and college wouldn’t do anything to help. The youth centre wouldn’t listen to us either even though it was clear that if she was capable of doing this to our son she could do it to someone else in their care.
About three or four months after he came back he started to have nightmares and flashbacks. He had Post Traumatic Stress Disorder. Several months after he came back he had his first severe seizure, was rushed into hospital and diagnosed with Juvenile Myoclonic Epilepsy. It may have raised its ugly head anyway but I still think it was triggered by the stress of what had happened and the worsening of his diabetes through lack of care.
Sixteen is a weird age. You have more control over your destiny and more chances to screw it up. You can refuse help or treatment and your parents – who are still legally responsible for you – are ignored.
After our experience and the not-my-responsibility fobbing off and lack of concern we encountered I’m not surprised we hear about so many vulnerable children and adults dying at the hands of abusers. I wonder if their parents and carers were told it was great they were being social?
Exclusion often refers to the removal from or the refusal to allow to participate in school, but there are other ways to exclude and it can happen at any age.
What I’m going to focus on here is exclusion at – or rather, from – work. This can actually happen to anyone but having a neurodevelopmental condition like autism will certainly help single you out as different, and therefore a target.
You see, when a group of (gotta say, mostly neurotypical) people bond together into a group, or clique, they always need a shared villain or scapegoat. Someone to gossip about, to complain about and to mock. Not only can this be harmful to the person experiencing it but it can also affect their career, i.e. their chances at promotion or progression in their job.
I’m going to tell you about the time it happened to me.
When I finished college I stayed on at the retail job I had taken to help fund myself during my studies, although I took a sidestep into a different department so I could get more hours. I joined a well known brand with two separate departments within it.
At first I was one of two men amongst several women, but this changed after a few months and I found myself being the only man working there. This didn’t bother me even though I found myself out of my depth when the conversation became something more likely to be heard at a Hen Party. They also seemed to not be able to get a handle on me as I wasn’t a typical “lad”. But things at first were fine.
After about six months the departments were split up and the larger one with most of the staff went to a different floor and I was stuck there in my small department on my own. This is when the exclusion began in earnest.
I was left alone on my department for the vast majority of my shifts, only seeing someone from the other department if they really had to and at the end of the day. Around and around my department I went, tidying up the merchandise to the point it almost became OCD.
This went on for months, long lonely months left to my own thoughts, increasingly darker and peculiar thoughts. I could almost feel myself losing IQ points. Socially I became even more withdrawn, not ideal in a situation where my socialising was scrutinised to begin with.
It has been proven that social exclusion can hurt a person in the exact same way physical trauma can. I started to self-medicate, drinking before a shift and during breaks. At the end of a shift I would go home, straight up the stairs and crash out on my bed, burnt out. During stressful periods I even suffered from physical symptoms like dental infections, rashes and boils – in one memorable episode my legs and pelvis area were covered in septic boils, but I still turned up for work.
Finally I got some company when a Saturday worker was put on my department. Interestingly another female but I’ll get back to that later. On her first day she met with the manager and then came down. She seemed timid, off-ish and uncomfortable around me. Thankfully this bad start improved and over the weeks we became good friends. In fact when she finally left only us two went out for a drink, totally platonic of course.
During this leaving “do” she confessed that on her first day when she met with the manager she had said negative things about me and warned her I would probably not speak to her. This was before she even met me and had a chance to form her own opinion. An example of the kind of negative attitude towards me actively being fostered on the other department and the kind of atmosphere I had to deal with every shift.
Now let me talk about how exclusion can affect career progression. We had a system of levels you could work through, with accompanying pay rise. But how can you be observed carrying out those competencies you need to show in order to go up a level if the management is hardly ever with you?
When an opportunity to be sent for training in the new back of house computer system came up I, with my qualifications and training in computing including programming, would’ve seemed an obvious choice. But no, they were going to send another part timer who hadn’t been with us long. I spoke up about this and they reluctantly sent me along with the deputy manager. As this training was situated three counties away I assumed they were looking forward to a nice day out together.
So being on the other department with everyone else was beneficial career-wise, as was being social with the management. Basically being part of the clique was beneficial. And the members of this clique defended their place in it savagely. Of course I was the threat from over the wall, the growling beast in the trees, the smoke monster on the island.
I remember one incident where an employee on a higher level than me (easily done considering I was still stuck on entry level) had been covering my department on my lunch and had merchandised a stand according to the strict guidelines we had to follow. It looked pretty crap as there was too much of one colour, so I checked with the guidelines and saw that I could swap one of the products out for another of a different colour which would’ve been more aesthetically pleasing. When this was spotted by the other employee not only did she berate me aggressively but two other employees took turns coming down to do the same. When this employee left they told everyone they didn’t want me to come to the leaving do or contribute to a goodbye gift.
Speaking of goodbye gifts I once agreed to put an item on my staff account (which was similar to a credit card or store card which included interest if not paid off) when an employee left. When I tried to get the money off the other employees they pretended to know nothing about it and even when I took it to the manager she also played along. I have to remind you that I was only on part time hours at this point and this was before the introduction of the minimum wage.
If you think those incidents are bad they pail in significance to the time I was sexually assaulted on the way back from a lone trip to the cinema. The assault itself wasn’t serious but bad enough to really throw me and mess with my head. I went through the usual victim anxieties, asking why he picked me etc. I didn’t tell my parents or friends about it but one day at work I couldn’t keep it bottled up and told some work colleagues. They laughed. Worse still, when they realised I was shook up about it all they could say was, “Why didn’t you hit him?” Can you imagine if this had happened to a woman telling all male work colleagues of a sexual assault?
The final straw came when an official management role became available on the actual department I had been solely supervising for the last year and a half or more. I was surely a shoo-in? Finally having an official title, more money per hour and full time status would make up for the loneliness and exclusion I’d experienced.
However the role went to an 18 year old who had been with us for two months. To be precise she had worked for our sister store for longer, and this is where she would have met my manager. Did my manager know in advance that this position was upcoming and was a deal made for this 18 year old to come across just before the vacancy became available?
The interviews were actually carried out by a manager from a bigger store to give the impression of lack of bias, however all the management in an area know each other. The official reason why I missed out on this role was that they claimed she showed “get up and go” in which, in all fairness, they were absolutely correct because after two months in the role she “got up and went”.
So I was back being the sole staff member looking after a department for which I was deemed not suitable to supervise in an official capacity. Either the way I had been excluded had affected my career prospects so much I could not move any further forward or the toxic environment had spread further afield with the same effect. What could I do? Dear reader I took them to tribunal.
Now, as promised, back to the subject of all the other employees (and for a period, all incoming employees) being female. Was this just a coincidence or down to the kind of departments they were? After word of my tribunal case got around our neighbouring departments an employee from one approached me to confide that her son had asked for a job at my branch, only to be told men couldn’t work there for the same reason they’d been giving me. Before applying for tribunal I had called the Equal Opportunities Commission and discovered the reason I had always been given for why I couldn’t join my team mates on the other department was in of itself illegal.
So I was not the only male being discriminated against and not the only one being kept out of the clique. This is what happens when a collective like this becomes so entwined and dependent on itself. Nothing can be allowed to threaten its cohesion and consistency and its web of favours and back scratching.
Eventually all the employees I had had trouble with left and I was the last one standing. It was a hollow victory though as although they would’ve never fired me the company certainly didn’t want me moving any further upwards. When I finally left after five very long years I tried to talk the few employees left to join me in the pub for a farewell drink. Two showed up but stayed for only one drink before leaving me to drink on my own. It was oddly fitting.
What part did Autism play in this sorry chapter in my life? I wasn’t diagnosed at this point but was aware I struggled in some situations and was “different”. I was better at pretending I wasn’t though and good enough at it to land jobs but the keeping them part was the problem. But whether or not I came across as “a bit off” or perhaps didn’t handle some social situations correctly does that justify the treatment I received? Of course it doesn’t.
And would a diagnosis back then have made a difference? Perhaps if during my employment when I could have used it to explain certain miss steps and communication cock-ups. I would’ve kept a very close eye on discrimination, not having to rely solely on sex discrimination, although that was obviously also happening and not just to me. But if I had already had my diagnosis before the job and I had declared it at my interview then the sad fact is that I probably would’ve never been appointed in the first place.
Autism isn’t even the issue here, any difference (real or imagined) can place you in the unfortunate position of being the MacGuffin, the scapegoat, the villain to a clique. It is the clique that is the issue here and they exist anywhere humans can come together.
Workplace bullying by cliques is a real issue and one that needs to be addressed by legislation and management good practice. The fact that a manager was instrumental in my exclusion and the management above her didn’t seem to care shows a total lack of actual people skills.
What it does show – and this is something most autistic people have known for years – is that things are skewed toward a certain type of person, and that person is usually not autistic. Call it Toxic Extroversion or Hyper-Neurotypicality or encapsulate it as the kind of personality who becomes a candidate on The Apprentice it is increasingly what “normal” is being shown as that to which you should aspire.
Cliques, however, can also just be a load of friends, drinking buddies, people who go to the same bars and clubs and drink the same drink, watch the same TV shows, gossip about the same thing. They are everywhere and wherever they are there will be one, or more, scapegoat being punished. Most often than not that scapegoat will be autistic.
We’ve all heard of Masking and how autistic people can hide behind a mask of pretend normalcy to fit in, but Masking in clinical and medical situations can lead to a lack of support.
Imagine – if you can – an autistic person having to go to an appointment or assessment with a medical professional. Imagine someone who isn’t comfortable going into a room with a total stranger and having to describe their issues or communicate a feeling.
What strategy could they use to avoid the stress of this situation, to try to give that professional what they want, to try to just get it out of the way? Because you can trust me when I say that no matter how serious a situation is or how much that person wants it sorted by the time their appointment comes around they will be so anxious they’ll want to be out of that room as soon as they enter it, if they haven’t already cancelled it.
So they will tell that medical professional what they think they want to hear, they will be self-deprecating and apologetic at even attempting to waste that professional’s time. They will try their best to appear as normal as possible, camouflage their difficulties – the issue they’ve actually come to see about as well as their difficulties in communicating it – they get out of there as soon as possible.
Masking is born of the fact that we are pack animals. Being part of a group means having to react quickly and instinctively in many varied situations. This is where the Mirror Neurons come into play. A recent discovery, Mirror Neurons help us pick up cues from other people and copy them: dancing, learning actions and even contagious yawning.
You’d be tempted to think that autistic people have deficits in these Mirror Neurons but you’d be wrong. In research tests it has been proven that in fact autistic people out-perform the non-autistic with mirroring tasks. Where it all falls apart is when other parts of the mind try to help out too.
So Masking is a mix of unconscious and conscious (and often very strained) mirroring. Those two may even be at odds with each other, hence some non-autistic people might find the autistic person odd or not-quite-right.
In clinical situations, particularly for kids, Masking is often totally ignored or the professionals are not even aware of its existence. When I attended appointments with my son I had to constantly make counsellors and doctors aware that what my son has just finished saying was complete tosh. Of course this put me constantly in the “negative position”, particularly considering professionals dealing with kids tend to use overpowering positivity while building rapport.
This is like catnip to a Masking autist as it gives them a very easy target to aim for. Recently during an appeal proceeding we received letters sent to my son’s GP from his counsellor which made it seem he had made the greatest recovery of all time, not very helpful as evidence! When these letters were written and my son was supposedly doing amazingly well he was actually talking of suicide and neglecting his diabetes regime which in a way was a kind of slow suicide.
You can see how this could be a bar to getting appropriate support. A lot of assessments and appointments whose raison d’être is to gauge how much support is needed are dependent on the patient being able to communicate that need efficiently. Obviously autistic people are already at a disadvantage here, never mind those who Mask effectively.
Take for example those Work Capability Assessments carried out by information gatherers – not necessarily with a solid medical background – for such vital benefits as Personal Independence Payment and Employment and Support Allowance. The success rates for these benefits have often been queried and it is undoubtedly their remit to kick as many genuine claimants off as they can.
Imagine a masking autistic claimant having to face the cleverly worded, designed to catch you out, dialogue in one of those assessments. You don’t have to as I myself was asked in one of my first assessments about how long I would be off and as I thought the whole point of the assessment was for them to be reassured I wouldn’t be on the prospective benefit for ever. So I told them I was prepared for returning to work and was looking forward to it etc. Obviously I failed my assessment that day.
Picture my son, if you recall my previous examples of his camouflaging his issues and mirroring the positivity-heavy rapport of clinicians, going in for such an assessment. Again you don’t have to, as he did, and was immediately and perhaps predictably stripped of his disability benefits and I of my carers.
It took a year to get this decision overruled. A year of financial hardship and the lack of extra support that a qualifying benefit like PIP can bring. Luckily at his Tribunal hearing one of the panel was au fait with the concept of Masking (I’d included two academic papers on the subject in his evidence bundle just to be on the safe side).
Roughly 70% of benefit appeals are found in favour of the applicant. This is an expensive business easily avoided. It is a national shame that such a high number of people in need are stripped of or not given vital benefits, it is even more worrying if you consider the proportion of those failing could be doing so due to Masking and not only an ignorance of it but actively working a system that exploits it.